Topic: Diagnosed with Atypical Lobular Hyperplasia

Forum:
High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Hello, I am learning my way around here and posted elsewhere, but I think this may be a better place. First--thank you, I am very appreciative of all of you and that we have this site.

I am 49 years old. My sister was diagnosed at age 38 and she passed at age 42. I have been getting yearly mammos since late 30s. My recent mammo showed a cluster of calcifications BIRADS 4B. I had a mammo-guided, vacuum assisted, seated stereotactic core biopsy. I was told today that it is ALH and a lumpectomy is the next step. I have been doing research and am confused by the following explanation on John Hopkins site discussing ALH & ADH:

"ADH is an abnormal appearing growth of cells within the breast ducts that is associated with an increased risk of subsequent breast cancer. If ADH is found on needle biopsy, a surgical excision is usually performed to see if there is worse abnormality present in the breast. If only ADH is found follow-up is usually sufficient."

"ALH is also an abnormal appearing growth of cells within lobules of the breast that is associated with an increased risk of subsequent breast cancer. If ALH is found on needle biopsy, it is controversial whether subsequent excision needs to be performed to rule out a worse abnormality in the breast or if follow-up is sufficient. If ALH is found on an excision (lumpectomy), follow-up is usually sufficient."

I am wondering why for ADH a lumpectomy is standard, but for ALH it is controversial. Also, going through the boards I've come across some women who went straight from needle biopsy to mastectomy after diagnoses of ALH. Also, someone who was told ALH, but then LCIS after excision. My radiologist made it sound like there was no rush to do an excision, but now I am confused after all I've read. If anyone can shed some light I'd be grateful.

Hi NYCme - I don't get on here much because my surgery was May 2010 - but decided to today and came across your story. I was 49 in Jan 2010 and got the diagnosis of ALH (had calcifications and got diagnosis after lumpectomy) - this is after many years of numerous biopsies and a strong family history. I was tired of the worry and did not want to take Tamoxifen - my surgeon said I was a canidate for nipple/skin sparing masectomies. I have been really happy with the whole process and made the right decision for me. There are not too many ladies that have had PBMX because of ALH - but there are a few of us. Let me know if you have any questions or would like to chat - I'd be happy to talk to you. Good luck

Thank you so much Valerie (and all great ladies who have been answering my questions.) I'm glad that you feel happy with your decision. I have a consult in early December and will let you know what happens. Best wishes.

Just wanted to post an update so anyone with ALH can see my progression. Finally got into see the BS, scheduled for an MRI at the end of the month and mid January for surgery. I am told if the MRI sees other goodies, I will have to come in and have another consult with BS...if not, my excision will be as scheduled in January. I will have a "wire localization" (do not like the sound of that!!)

Wire localization not bad at all. They basically squeeze your breast like a mammogram and place the wire in your breast. This is typically done when you do not have a palpable mass that can be easily defined and located by your surgeon. When I had mine (for ADH, not ALH), it was no more uncomfortable than a focused mammogram. Lidocaine is your friend in this situation.

Thanks Stipey. Are you allowed to take something before localization? I am super-sensitive. It's been over a month since stereotactic and I still have a hematoma and pain twinges & sensitivity ; ( I self-medicated for the stereo, but would not do so here since they'll have to put me out afterward.

I agree with Stipey, it wasn't a big deal at all. Main thing with mine was they just kept having to readjust me in the plates over & over to get the right spot. I never knew when they inserted the wire. I even had to leave the breast center & go to a different facility for the surgery. They just taped it down & put a bandage over it.

NYCME, check with your doctor to be sure you can take something. Sometimes they can give you a little something before your procedure with a sip of water. I really didn't find it necessary. The fear of the unknown was actually worse than the reality in my case. Best of luck to you.

I had a wire loc excisional biopsy on Monday morning. For me, the local anesthesia and wire placement hurt a bit, like a bee sting, but in my case the mass itself and the area (just under the nipple/areola) have been tender anyway.

Last Friday the anesthesia nurse called me and we went through meds, etc. I asked if I could take klonopin to help me sleep the night before and she said yes, no problem. I'm glad I did or that might have been one of the longest nights of my life.

But... I agree with the others: the anticipation is worse than the actual procedures. The surgery was a breeze. I was given Versed and fell asleep. I woke up fairly easily and went home a half hour after the surgery.

I recommend a soft gel, small ice pack that you can put in your bra for afterward if you can locate one. Now on day three of recovery and still a little sore but it's starting to look a little better and less swollen. The waiting for the pathology report is the worse in my case. I'm one of those "lucky" people who had a false negative core biopsy so I had no choice but to have the surgery. I will know what we're dealing with by tomorrow.

Gross Description: A.) LB w/cal are approximately 3 cores tan-white to pale yellow core biopsy fragments, ranging from .4 up to 5.7 cm, each measuring .2 cm in diameter. Levels x3 will be cut; B.) LB w/o cal are approximately 12 tan-white to pale yellow core biopsy fragments, ranging from .6 up to 5.0 cm, each measuring .2 cm in diameter. Levels x3 will be cut.

I am meeting with breast surgeon next week to discuss her recommendation of an incisional open biopsy. I have read that with this diagnosis an excisional open biopsy should be done. maybe someone that has gone through this already can shed some light on why one is preferred over the other. and which one you have gone through. Also would like your input whether you have been told by your bs that this diagnosis of ALH is in fact pre-cancerous, and how does this increase my risk of developing bc? thank you for your help and hoping to hear something before next week, so I am more prepared for my meeting with the surgeon. Again, I wish everyone the best of luck!!!! we will all conquer this together!!!!!

I have read that incisional biopsy removes part of the mass and is better for larger masses. If benign, you have lost a minimal amount of breast tissue. Excisional biopsy removes the entire mass and that's the way to go for a smaller mass. Of course you should ask your surgeon about his/her preference in your particular case. I don't know about the ALH. Best of luck to you!

Concerned 2012~Regarding how Alh increases your chances for developing bc, my doctor told me that the diagnosis raises the normal person's risk from 13% to 20 to 25%. The fact that you have a first degree relative with bc also raises your risk. Usually it is recommended that you go on a 6 month surveillance program where you alternate MRIs and mammograms. Tamoxifen may also be suggested for your case. The nice thing...if there is such a thing.....about having Alh is that you have time to research your options and make an educated decision, but don't "Dr. Google" too much, it'll drive you crazy! Good luck to you !

I posted this on another spot, but now think it is better suited here. I hope thats ok.

I had bilateral lumpectomies with wire localization for ALH yesterday and am very sore, but it's manageable. Because of the holidays my BS said it could be next Wednesday before we receive the results :(

Here is my story so far. I went for a mamogram on Oct 17th, my first as I am 41 with no family history at all, and received a call back the next day. Went in for a second look and they ordered ultrasound as it seems I have extremely dense fibrocystic breasts. Went for ultrasounds, bilateral, and they took over 300 images and said it was a new office record! (not sure I am proud of that) They then ordered biopsies for the following week.

The biopsies. wow, not fun for me. I ended up having a stereotactic biopsy, 3 ultrasound guided core needle biopsies and an aspiration in one visit. It took over 5 hours and was a very long stressful day. The radiologist and ultrasound tech were fantastic and so supportive that day. It really was the only thing that helped me get through so much in one day especially being "new" to the whole BC scare thing. I was mildly sore and extremely bruised for over two weeks. The results came back with:

Yesterday I had the lumpectomies on A and D. My BS was able to get clear margins and I am feeling pretty good this morning. I have been told I will take Tamoxifen and I am not sure how I feel about that. I have also been told I will have an MRI in January, and will be on the 6 month alternating MRI/Mam ride.

My quesitons are what do you think? What has your expierence been with Tamoxifen? Anyone have a similar experince and find out they have LCIS? All I can think is going through this every 6 months? Heck no. My PCP said he does NOT want me going through this 2 times a year. If this all comes back fine next week, and they even hint at more biopsies etc next year I will absolutely look at more aggresive options. I am a single mom with a great, but demanding job. I am dreading going through the holidays without answers!!!!!

Thanks for your time :)

ALH/ADH bilateral, FEA left. In the last year: 4 core biopsies, 1 stereotactic biopsy, 2 lumpectomies, hysterectomy and right side oophorectomy. Tried tamoxifen, not a fit for me. PBMX scheduled for 1/14/15

Thank you for your insight. I will definitely try to stay away from Dr. Google. I have been on the 6 month roller coaster for the past 2 years, and not looking forward to it any longer. I will wait to hear what the bs has to say this time and take it from there. with everyone's input and my research, I have become more educated, and have a better understanding as to what my options may be.

Hi Cinvee, I haven't had my wire/lumpectomy yet. I just had an MRI today to see if anything else is found before the surgery, but I can sympathize about the every six months thing. I guess we need to have all the info in front of us first before considering other options. (PS--funny what you said about not eating before procedure as that is a concern of mine as well....boy do I get cranky when I'm hungry!)

cinvee--glad to hear the surgery went well. Praying you get good results soon. (on a side note; it's not a given that with ALH you will be facing more issues every 6 months. I was diagnosed with LCIS ( a step further along the bc spectrum with double the risk of ALH) over 9 years ago and my risk is further elevated by family history (mom had ILC) and I have not needed any more biopsies or lumpectomies in all these years! and I tolerated tamoxifen well and now evista. So try not to worry about the "what ifs" and enjoy the holidays!

Yeah, Anne was kind enough to talk me down off the cliff when I was ready to go get mine whacked off at the thought of maybe having to have biopsy after biopsy. I just had my first six month f/u appointment & mammo last month. I have calmed down a lot:)

I am hoping someone can provide their opinion here. After stereotactic biopsy in October found ALH in one breast (family history), I am finally (after Sandy and holidays) scheduled for the lumpectomy (excisional biopsy) a week from now. However, I am now having second thoughts about this.

Here's my question: When they do go in and do the lumpectomy IF there are some cancer cells around, even though there is a clip....there is no guarantee they'd excise any/all the cancer cells. So, either way...I'd have to become a member of the 6 month club. If I am going to be a member of this club anyway...if there are some cancer cells growing, they'd most likely be caught in one of my 6 month screenings, no? So---wouldn't it make sense just to wait and see?

No, you need the lumpectomy to make sure there is no invasive cancer mixed in there someplace. Make sure there is nothing worse, then you know if you can go on surveillance or if you need further treatment. My stereotactic just showed ALH but my excisional also showed LCIS & sclerosing adenosis. It could have had DCIS or something too, but it didn't, but you don't know til you get it checked. I thought the excisional was easier than the stereotactic.

I am just following up on my posts. You were right! The wire localization was no big deal! I had been dreading it for months and it was a real non-event. My results came back LCIS and next stop will be a genetic counselor (though I already know I'm BRCA 1 & 2 negative). Surgeon did mention Tamoxifen, though I'm not yet clear on the amount of protection it actually offers, especially after reading this:

"Another option is to take the drugs tamoxifen or raloxifene to reduce your breast cancer risk. Both drugs come in pill form, and are taken daily for five years. Both drugs reduce the incidence of breast cancer in women with LCIS by about 56 percent. That sounds like a huge risk reduction, but it's actually not. If a drug reduces your risk of breast cancer by 56 percent, it means that if you take the drug your risk will be 56 percent of the original risk. The risk of breast cancer for a woman with LCIS is 1 percent per year over that of the average woman. That means with tamoxifen your risk is now 0.5 percent a year over that of the average woman."

I'm not sure if that makes it worthwhile for me, but I will begin on my research (and postings) for next steps.

So glad that you did the wire loc biopsy and it wasn't so bad. Sorry that you were upgraded to LCIS. I guess you are right that you are still in the 6 month watch and wait group, but you will be watched very carefully. With the DCIS, after treatment is over, I think I'll only be "watched" once per year (if I don't do the endocrine therapy). I'd recommend doing an oncology consult and also talking with the surgeon again about her views on the Tamox. I will be obsessing over that same issue shortly. Best of luck to you.

Dx
8/2012, DCIS, Right, 5cm, Stage 0, Grade 3, ER+/PR-
Surgery
10/26/2012 Lumpectomy in one or both breasts: Lumpectomy in my right breast
Surgery
10/05/2012 Lumpectomy in one or both breasts: Lumpectomy in my right breast
Surgery
07/27/2012 Lumpectomy in one or both breasts: Lumpectomy in my right breast
Radiation Therapy
01/11/2013

NYCMs
I am so sorry you were upgraded to LCIS. I was dx w/ALH during sterotactic core biopsy. I too just had an excissional surgical biopsy (not bad at all) and waiting for results. I am worried that I will be upgraded. My MRI didn't mention area of atypia, so now I am not convinced that MRI shows everything. I am assuming your LCIS didn't show up on your MRI. Good luck!!! I wish you and everyone in this forum the strength and guidance to help in making decisions and staying strong and positive!!! All the Best, Valerie2

Concerned, why do you assume her area of LCIS didn't show up on MRI? MRI's tend to show so much stuff they cause false POSITIVES. If you are thinking that the LCIS was a separate mass, I don't believe that was necessarily true. They do the MRI to check that there are not other things not seen on mammo. Just because the atypical cells got upgraded doesn't mean they were separate. For example, my stereotactic biopsy was ALH, suspicious for LCIS. My MRI did not show any extra area of concern. When my ALH mass was removed by excisional biopsy and they looked at a bigger chunk than was removed by core it was, in fact upgraded to LCIS.